Facioscapulohumeral Muscular Dystrophy is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and related to their FSHD.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team when the Covid-19 pandemic forced widespread social distance. These activities are aimed at supporting the community in taking care of physical and mental health during this stressful time, while also feeding the collective hunger for more information and knowledge about research.
Latest Blog Posts
If you’re hand grip has weakened, here’s a product that could be helpful. Originally designed to help children grip a pencil properly, these pencil grips are manufactured from soft silicone with perforations to keep your skin comfortable. The manufacturer states that this “pencil gripper can be used by children, adults or the old with arthritis…
In this video, Diego Cadavid, MD, Senior Vice President, Clinical Development, at Fulcrum Therapeutics provides an update on ReDUX4, the Phase 2b clinical trial currently underway testing the safety and efficacy of losmapimod to treat facioscapulohumeral muscular dystrophy (FSHD). The…
Upcoming Featured Events
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to...Find out more »
The National Virtual Walk & Roll to Cure FSHD is the only national event focused solely on funding progress for FSHD. Led entirely by dedicated volunteers, supported by staff, these events take place all over the nation. Find your local Walk & Roll HERE! No local Chapter-Led Walk & Roll near you? Don't worry! You can still...Find out more »
This month's webinar presenter is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. Molly brings a unique perspective on the impact of the FSHD community's role in therapy development. She previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people...Find out more »